"I have an appointment with my NHS Respiratory physio team on Friday and will plead my case for an F30 or F40. They said to me last week they did not have f40 in as yet however they are soon to see resmed rep any day now."
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Advice wanted for new CPAP user
Hi,
I was diagnosed with Sleep Apnea last month and have been given my CPAP machine this week.
I was hoping that I would be able, at last, to get a good night sleep but I've had three awful nights getting tangled up and uncomfortable and am finding it very hard to accept that I'll have to wear this for the rest of my life.
Is there anyone out there who can give me any kind of assurance that it gets easier and starts working after a while? I felt so bad at 04.00 this morning I took it off and thought I'd have a few hours rest without it but, after about 15 minutes, I changed my mind and put it back on.
Hopefully,
Mike
Views: 953
Replies to This Discussion
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Permalink Reply by Mike Spicer on
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Thanks Muz, it seems that perseverance is the rule but I know giving up is not an option. I've at least now received a message from the hospital saying they hope to contact me in the next couple of days (they are in the process of moving).
I'm hoping they've got a range of masks to try!
Cheers, Mike
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Permalink Reply by Kath Hope on
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That's good to hear, and the sooner the better! When you try the masks on make sure you'r attached to a CPAP blowing air, and if possible lay down. Trying a mask on with no machine in an upright position is no good. It's like trying on a pair of shoes and not walking in them before purchase!
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Well, bad news from the Sleep Disorder Clinic. After a six day wait they have called me back and told me that my case isn't urgent and they cannot see me for four weeks to try different masks. Everyone advises trying as many masks as possible and, even when I do get to go there, they only have a choice of three and say they believe I already have the best one, which I clearly disagree with!
So, my question is, how do I try different masks? I like the idea of the Fitlife full face mask but how do I try one, or any for that matter, without buying them first?
Hoping for you advice again. Cheers, Mike
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This is very bad service Mike and so sorry to hear this :( Leave me to think about this and I'll speak to you later..
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No I don't get that problem Mary. I wonder why you do! My last one was used almost every night for a full year. Have you ever tried the replacement straps Mary, as they do a small size, and I remember you saying you have a small face?
Mary Zimlich said:So sorry to hear they have put you off for so long, Mike. I do hope you come up with a way to get a FitLife. I love mine. The only drawback, and Kath may get longer use from hers, but I find they only hold a seal for 3 months. It's a one piece mask so there are no cushions to replace to extend the life of the mask.
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Permalink Reply by Darryl Milligan on
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I was given the same mask as you, and found this one a lot better, and it is only £60:
http://www.eu-pap.co.uk/flexifit-407-nasal-mask.html
I was surprised how easy it was to keep my mouth shut, and I don't feel claustrophobic in it. It is very comfortable, and doesn't leak very easily.
Daz
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Permalink Reply by Tigers Fan on
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An interesting question! What is reasonable expectation of the NHS and what is not? You make me realise that I have accepted the status quo with my part of the NHS - I get a mask a year. With some assertion, I can get (so far) the mask I want free of charge from the clinic but I have to do the discovery at my own expense. This means I buy my own masks till I find one that suits and then get a second from the NHS (one on, one in the wash).
I chose Resmed masks as my favourites from on-line research and then invested £25 on a mask fitting session at Abingdon - and tried them all. Full face, Quattro and then Q FX have suited me.
But - as masks are such a personal affair, is it reasonable to expect the NHS to fund our trials and errors? It's very easy to argue that it is - until one thinks of the cost! A new mask is affordable for many of us, whereas huindreds of thousands of them would break the NHS bank and nudge things like a new hip or heart - or bariatric surgery, come to that - into touch. Maybe the status quo is reasonable, after all.
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My local NHS hospital said they will supply anything I need, free to me, as they "bill my GP".....lol. And if I want any "extras" they can get them for me at cost price.... I can't complain at that service.
Tigers Fan said:An interesting question! What is reasonable expectation of the NHS and what is not? You make me realise that I have accepted the status quo with my part of the NHS - I get a mask a year. With some assertion, I can get (so far) the mask I want free of charge from the clinic but I have to do the discovery at my own expense. This means I buy my own masks till I find one that suits and then get a second from the NHS (one on, one in the wash).
I chose Resmed masks as my favourites from on-line research and then invested £25 on a mask fitting session at Abingdon - and tried them all. Full face, Quattro and then Q FX have suited me.
But - as masks are such a personal affair, is it reasonable to expect the NHS to fund our trials and errors? It's very easy to argue that it is - until one thinks of the cost! A new mask is affordable for many of us, whereas huindreds of thousands of them would break the NHS bank and nudge things like a new hip or heart - or bariatric surgery, come to that - into touch. Maybe the status quo is reasonable, after all.
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Permalink Reply by Terry Vella on
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I know this won't help Mike just wanted to give you a perspective from Aus. Not sure about our public health system but I'm in our private health system and we go to mini clinics and we can lease machines and masks for as long as we want normally 3 months then the lease price comes off the purchase price. CPAP machines ae $200.00 per month and masks are $100.00 per month but you can change as many times as you need. I kept my machine Resmed Autoset and changed my mask 5 times in 3 months till I got the one I am happy with Resmed Mirage Quattro. Just though I would put a different perspective on this problem.
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Permalink Reply by gina on
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hi mike sorry i cant help you as i am having major probs like you i spend about 3 hours trying to get to sleep with mask on even though i am so tied i drop of for a few mins then wake up give in at about 2 am i know i should not but i have to work and at the moment i so so struggling so it looks like getting used to is so hard but you made me feel better that i arnt alone so hope this helped you tox
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Gina,
Let me say that the first 5 hours of each night are the worst and I usually get some sleep between 04.00 and 08.00, so don't give up. In my very limited experience, I've found taking mask off for a few minutes every hour or so makes the night passable until I eventually sleep.
Like you, this forum has made me feel that I'm not alone!
Mike
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Thanks mike
i will try your tip any think worth trying like you so glad to have found this forum i just hope it helps and i think it will as people know what we are going through and may have some tips all my hubby says is you have to get used to it !! even though i am trying
Gina
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